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Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs 3 Psychosocial Health Services CHAPTER SUMMARY A range of services can help patients and their families manage the psychological/behavioral and social aspects of illness that can adversely affect their health care and outcomes. An individual’s own psychological and informal social resources often counteract many of these stressors. However, when these resources are not available or are overwhelmed by the number, magnitude, or duration of stressors, or when a problem requires professional intervention, formal services are needed. Evidence supports the effectiveness of services aimed at relieving the emotional distress that accompanies many chronic illnesses, including cancer, even in the case of debilitating depression and anxiety. Good evidence also underpins a number of interventions designed to help individuals adopt behaviors that can help them manage disease symptoms and improve their overall health. Other psychosocial health services, such as transportation to health care or financial assistance to purchase medications or supplies, while not the subject of effectiveness research, have wide acceptance as humane interventions to address related needs, and are longstanding components of such public programs as Medicaid and the Older Americans Act. Many health and human service providers deliver one or more of these services. In particular, strong leadership of organizations in the voluntary sector has created a broad array of psychosocial support services—sometimes available at no cost to patients. Together, these services have been described as constituting a “wealth of cancer-related community support services” (IOM and NRC, 2006:229).
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Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs A DIVERSITY OF SERVICES An array of services exists to address the varied psychosocial problems and needs (summarized in Chapter 1) that often accompany cancer and its treatment (see Table 3-1). As defined in Chapter 2, psychosocial health services are those psychological and social services that enable patients, their families, and health care providers to optimize biomedical health TABLE 3-1 Psychosocial Needs and Formala Services to Address Them Psychosocial Need Health Services Information about illness, treatments, health, and services Provision of information, e.g., on illness, treatments, effects on health, and psychosocial services, and help to patients/ families in understanding and using the information Help in coping with emotions accompanying illness and treatment Peer support programs Counseling/psychotherapy to individuals or groups Pharmacological management of mental symptoms Help in managing illness Comprehensive illness self-management/self-care programs Assistance in changing behaviors to minimize impact of disease Behavioral/health promotion interventions, such as: Provider assessment/monitoring of health behaviors (e.g., smoking, exercise) Brief physician counseling Patient education, e.g., in cancer-related health risks and risk-reduction measures Material and logistical resources, such as transportation Provision of resources Help in managing disruptions in work, school, and family life Family and caregiver education Assistance with activities of daily living (ADLs), instrumental ADLs, chores Legal protections and services, e.g., under Americans with Disabilities Act and Family and Medical Leave Act Cognitive testing and educational assistance Financial advice and/or assistance Financial planning/counseling, including management of day-to-day activities such as bill paying Insurance (e.g., health, disability) counseling Eligibility assessment/counseling for other benefits (e.g., Supplemental Security Income, Social Security Disability Income) Supplement financial grants aThe committee notes that, as discussed in Chapters 1 and 2, family members and friends and other informal sources of support are key providers of psychosocial health services. This table includes only formal sources of psychosocial support—those that must be secured through the assistance of an organization or agency that in some way enables the provision of needed services (sometimes at no cost or through volunteers).
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Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs care and to manage the psychological/behavioral and social aspects of illness and its consequences so as to promote better health. We note that some level of psychosocial support (e.g., providing emotional support and information about one’s illness) accompanies much of routine health care. Family members and other informal supports also meet many emotional and logistical needs in times of illness. However, when this level or type of support is insufficient to address a patient’s needs, more formal services are needed. Definitions and descriptions of these services and the extent of evidence supporting their effectiveness in meeting identified patient needs are discussed below. In addition to these services to address problems that arise at the level of the patient (the need for which will likely vary among individuals), psychosocial interventions are needed on a more uniform basis within clinical practices to address problems arising at the level of the health care system, such as failure to identify patients’ psychosocial needs, to link patients to effective services, and to support them in managing their illness and health. These more consistently needed provider- and system-level interventions to deliver effective psychosocial services are discussed in Chapters 4 and 5. EVIDENCE OF EFFECTIVENESS The effectiveness of some psychosocial health services has been substantiated through research. Others (such as the provision of transportation or financial assistance to purchase medications) have such long-standing and wide acceptance that they have not been the subject of much research interest. Others addressed in more recent effectiveness research appear promising, but require further study to clarify the extent of their effectiveness. Interest remains high in still others that have not yet shown effectiveness in research studies as multiple parties seek effective ways to meet pressing needs. This variation in the extent to which psychosocial health services are evidence based is similar to the variation seen in research findings supporting the effectiveness of individual biomedical health care services (Neumann et al., 2005; IOM, 2007). The approach used by the committee to evaluate the effectiveness of individual psychosocial health services is described in Appendix B. Limitations in Taxonomy and Nomenclature A serious problem encountered by the committee as it sought to identify and evaluate evidence of the effectiveness of psychosocial health services is the lack of a taxonomy and nomenclature for referring to these services. This is manifest in the controlled vocabularies of major bibliographic databases and other indexing services. For example, the term “psychosocial”
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Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs is not a medical subject heading (MeSH) used for indexing publications by the National Library of Medicine, and as of April 30, 2007, no conceptual definition of “psychosocial” could be found in the National Cancer Institute’s Metathesaurus (http://ncimeta.nci.nih.gov) or Dictionary of Cancer Terms (http://www.cancer.gov/dictionary/). Moreover, when the terminology “psychosocial services” is used in health care, it is used inconsistently. As a result, the committee’s first task was to agree upon a definition of psychosocial services to guide its work. The committee’s review of different definitions in the field and its considerations in developing the definition put forth in Chapter 2 are discussed in Appendix B. Examining the effectiveness of individual psychosocial services is similarly confounded by absent or imprecise terminology within and across databases such as MeSH/Medline, PsycINFO, CINAHL (Cumulative Index to Nursing and Allied Health Literature), and EMBASE. For example, “peer support” is not a MeSH heading. Moreover, even when different researchers use the same word, it may not always refer to the same intervention. For example, group psychotherapy (Goodwin, 2005), peer support delivered in a group situation (Ussher et al., 2006), group education (Weis, 2003), and varying combinations of these (Weis, 2003) (not always identified as multicomponent interventions) are all frequently labeled “support group” interventions—which unsurprisingly have been found to have inconsistent effects. Similarly, “illness self-management” or “self-management” is not a MeSH heading; it awkwardly and imprecisely maps to “self-care” in the MeSH database. In oncology, many illness self-management or self-care interventions are also referred to as psychoeducation or, more recently, cognitive-behavioral interventions. The imprecise and unreliable vocabulary used to refer to psychosocial services is manifest in evidence reviews and analyses of the effectiveness of “psychosocial services” in toto. For example, the series of articles entitled “The Great Debate” (Relman and Angell, 2002; Williams and Schneiderman, 2002; Williams et al., 2002)—whose titles (“Resolved: Psychosocial Interventions Can Improve Clinical Outcomes in Organic Disease [Pro]” and “Resolved: Psychosocial Interventions Can Improve Clinical Outcomes in Organic Disease [Con]”) and some of their content suggest the methodological soundness (and desirability) of lumping together divergent psychosocial health services and rendering an overarching judgment about their effectiveness. Reviews of the effectiveness of aggregate psychosocial services are problematic just as such reviews of the effectiveness of biomedical health care in the aggregate would be unhelpful (and unlikely)—a point made in the concluding article in the “Great Debate” series (see Lundberg, 2002). The committee determined that the absence of a controlled vocabulary impedes the identification, interpretation, and implementation
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Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs of research findings on psychosocial health care, and therefore makes the following recommendation. Recommendation: Standardized nomenclature. To facilitate research on and quality measurement of psychosocial interventions, the National Institutes of Health (NIH) and the Agency for Healthcare Research and Quality (AHRQ) should create and lead an initiative to develop a standardized, transdisciplinary taxonomy and nomenclature for psychosocial health services. This initiative should aim to incorporate this taxonomy and nomenclature into such databases as the National Library of Medicine’s Medical Subject Headings (MeSH), PsycINFO, CINAHL (Cumulative Index to Nursing and Allied Health Literature), and EMBASE. Evidence Reviews Provision of Information As discussed in Chapter 1, individuals who are being treated for cancer express the need for a wide range of information on their clinical condition and care. Patients need information about the onset, progression, treatment, and management of their disease and help in interpreting sometimes overwhelming quantities of complex information. They need to be able to find out about the normal course of their condition, the treatments that are available, and those treatments’ expected outcomes and side effects so they can make treatment decisions that are consistent with their preferences and care for themselves on a daily basis. Continuing changes in health care delivery and financing also make it increasingly important for cancer patients to have information that will help ensure that they receive high-quality care. This means having access to information about the qualifications of physicians; the relative quality ratings for hospitals and the insurance plans in which they participate; and costs for diagnostic tests, treatments, and hospitalization. It also means being able to obtain information on such services as transportation and other logistical resources, financial assistance, and support groups in the area. As with the array of psychosocial health services generally, the effectiveness of providing patients with these different types of information has not uniformly been the subject of research. The provision of information about insurance coverage or sources for obtaining wigs, financial support, or logistical assistance, for example, typically is not questioned as a useful service. The broad range of voluntary organizations that provide such information at no cost to consumers and the volume of patient inquiries
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Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs they handle are further testimony to their usefulness. (A table listing selected nationwide sources of information on cancer and cancer-related services available at no cost to patients is presented in the next section of this chapter.) In contrast, providing patients with information to enable them to care for themselves on a daily basis and make treatment decisions that best meet their goals and values has been the subject of much research. Indeed, the Institute of Medicine (IOM) has previously recommended that, “patients should be given the necessary information and the opportunity to exercise the degree of control they choose over health care decisions that affect them. The health system should be able to accommodate differences in patient preferences and encourage shared decision making” (IOM, 2001:8). Although there is little evidence that providing information about the onset, progression, treatment, and management of their disease systematically affects patient behaviors that in turn influence health outcomes, a substantial literature documents the beneficial effects of interventions aimed at improving patients’ participation in their care (Coulter and Ellins, 2006). While providing patients with information about their illness and potential treatments will always be only one of many factors that influence a specific behavior, it is clearly an important aspect of improving their participation in their care. The effect of providing condition-specific information tailored to the individual patient’s medical situation or condition has been the subject of many randomized controlled trials involving patients with cancer and other conditions, such as low back pain, diabetes, arthritis, and asthma. An analysis of systematic reviews of the effects of provision of health information found that, although the provision of information on the treatment and management of disease did not affect health status, written information improved knowledge and recall of health information, and the provision of verbal and written information together had a greater impact than the provision of either alone (Coulter and Ellins, 2006). A variety of strategies for transmitting information about their disease and its treatment to cancer patients have been tested in high-quality randomized controlled trials. Such strategies include presenting information through print materials, audiotapes, CD-ROMs, computer decision aids, and videotapes. These studies have found evidence for the effectiveness of such strategies in increasing knowledge and satisfaction with decision making, as well as reducing decisional conflict (Epstein and Street, 2007). For example, McPherson and colleagues (2001) conducted a systematic review to determine effective methods of information delivery to cancer patients. Ten studies met the inclusion criteria, covering interventions using audiovisual aids, audiotapes, interactive media, and written information. Written information was found to enhance recall and knowledge, and patients and their families valued practical information booklets. Two
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Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs important findings from the review are that cancer patients are a heterogeneous population whose information needs differ according to their preferences and coping styles, and that tailoring information to the patient reduces the amount of information needed and increases the relevance and recall of the information provided (McPherson et al., 2001). Another systematic review of cancer patients’ use of the Internet and its impact on health outcomes identified 24 surveys representing a total of 8,679 patients with cancer. Four types of Internet use were identified: communication (e-mail), community (virtual support groups), content (health information), and e-commerce. While a great majority of the studies on providing information to cancer patients have evaluated print materials and computer-based personalization of information, the modest amount of research findings on Internet-based information indicates that it has positive effects on self-efficacy (a person’s belief in his/her ability to carry out a course of action to reach a desired goal) and task behavior, encourages patients to make health-related decisions, and improves confidence in the doctor–patient encounter. However, patients reported feeling overwhelmed by the sheer volume of information available on line and were confused by conflicting medical information on cancer treatment (Eysenbach, 2003). It is particularly important to provide patients with information about treatment decisions so that they can participate in choosing among available effective options. Decision-support tools array such information in a way that enables patients to compare the risks and benefits of different treatments that are suited to their situation. An analysis of systematic reviews of decision aids for patients found that, as with the provision of information on disease and its treatment generally, such aids improve knowledge and information recall and lead to increased involvement in the decision-making process, and that patients who use them experience less decisional conflict. There is limited evidence that decision aids affect health service utilization in a way that in some cases leads to reduced costs, but no effects on health outcomes have been demonstrated (Coulter and Ellins, 2006). Multicomponent educational interventions, such as those including use of an educational audiotape, workbook, and values clarification exercise, also have been designed to provide the information patients need. One well-conducted randomized controlled trial (Goel et al., 2001) among surgical practices in Canada involving women with breast cancer who needed to decide between breast-conserving treatment and mastectomy found evidence of the effectiveness of such a multicomponent intervention, but only for women who were uncertain about what decision to make. There is some evidence that nonprint formats are of greater benefit for underserved groups and that these formats have an impact on health behavior (Coulter and Ellins, 2006). Nonprint formats are also useful in communicating with individuals with low literacy.
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Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs Services to Help Cope with Emotions A wide variety of mental health therapies have been developed to treat emotional distress and mental health problems.1 Although it was beyond the scope of this report to examine the evidence in support of all types of services to address all manifestations of emotional distress and mental health problems in individuals with cancer,2 the discussion below reviews peer support programs selected because of their widespread use and availability, as well as counseling/psychotherapy and medications that address depression and anxiety—among the most common mental health conditions affecting individuals diagnosed with cancer. Peer support programs Peer support is defined as a relationship in which people with the same condition provide emotional support to each other and share knowledge about dealing effectively with that condition. Vicariously experiencing the successes of others similar to oneself is a primary pathway to building one’s own self-efficacy (Bandura, 1997). Self-efficacy is viewed as a key predictor of how effectively individuals can motivate themselves and persevere in the face of adversity, how much effort they will make in pursuing a course of action, and what their emotional reactions to the course of events will be. Self-efficacy is also an important determinant of how extensively knowledge and skills are obtained (Pajares, 2002), and there is evidence that it is a critical factor in an individual’s successful self-management of a range of chronic illnesses (Lorig et al., 2001; Lorig and Holman, 2003). Peer support programs can provide one-on-one support (as in the American Cancer Society’s Reach to Recovery program) or support from groups. Peer support groups (also called self or mutual support groups) have been studied most often. Emotional support is a primary component of peer support groups (Weis, 2003; Ussher et al., 2006). These groups also typically provide information and education, sharing of coping skills, acceptance by others in similar situations, a sense of normalcy, and diminished social isolation (Barlow et al., 2000; Campbell et al., 2004). Many of these supports are the same as those provided by beneficial informal social networks described in Chapter 2, which have been found to reduce 1 In child and adolescent therapy alone, for example, it is conservatively estimated that, even if one omits various combinations of treatments and variants of treatments that are not substantially different, there are more than 550 psychotherapies in use (Kazdin, 2000). 2 For example, this report does not address the unique clinical treatment issues of individuals with mental illnesses such as schizophrenia and psychotic disorders. However, the access to specialized mental health services described in Chapter 6 pertains to cancer patients with all types of mental health problems and illness, not just those described in this chapter. The reader is directed to a recent IOM report, Improving the Quality of Health Care for Mental and Substance-Use Conditions (IOM, 2006), which addresses approaches to coordinating mental health care with other medical care for all types of mental health conditions.
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Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs morbidity and mortality. Expected outcomes include increased confidence and a sense of control in relation to self, improved coping with one’s illness, and more effective interactions with others, particularly medical professionals. Together, these outcomes promote a helpful sense of self-efficacy in dealing with the varied challenges of the illness and its treatment (Bandura, 1997; Thaxton et al., 2005; Ussher et al., 2006). Peer support groups are widely used to help people with a broad range of illnesses. One of the largest and most successful is Alcoholics Anonymous. Support groups for people living with HIV or AIDS are another example (Spirig, 1998). Such groups are often developed by individuals who feel marginalized socially by their illness because of the associated stigma, disfigured appearance, embarrassment, disability, or threat to life (Davison et al., 2000). After World War II, assisted by the American Cancer Society, patients who had had a laryngectomy, colostomy, or mastectomy began to form support groups in major cities to help cope with these permanent and stigmatizing body changes. Today, support groups for cancer patients are organized through nonprofit advocacy organizations—some devoted to patients with a particular form of cancer (e.g., The Leukemia & Lymphoma Society) and others, such as Gilda’s Clubs, The Wellness Community, and CancerCare, with a more general focus. These support groups are the most widely available form of free psychological assistance for patients with cancer. Peer groups have developed to help patients of all ages cope with cancer in all of its stages: at diagnosis, during active treatment, and during advanced disease (Plante et al., 2001). They are used most widely by patients with particular forms of cancer, the most common being prostate and breast (e.g., Us Too groups for prostate cancer and breast cancer support groups) (Goodwin, 2005). Today, the support offered by such groups frequently includes services from a health or human services professional, such as a physician, nurse, psychologist, or social worker, who facilitates group meetings or provides patient education or other services to the group. In fact, many groups that are called peer groups actually have co-leaders who are professionals. This involvement from health care providers often makes a “pure” peer group difficult to define; most groups today are to some extent hybrids involving both consumer peers and professionals. Research comparing peer and professionally led support groups has found no difference as long as the sense of community and mutual respect is maintained (Barlow et al., 2000). Research on the effectiveness of peer support groups has been difficult because such groups often arise naturally out of communities when people sense a need,3 and therefore do not easily lend themselves to the control of variables as is required to conduct controlled clinical trials. The varied 3 And not all patients want to participate in a support group.
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Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs components of support groups (e.g., group psychotherapy, informal emotional support, education and information) and the diverse participants and facilitators also confound the interpretation of research findings. According to Davison and colleagues (2000:216) in their review of the state of the art of peer support, “Support groups constitute a category with fuzzy boundaries, and as such they make scientists uneasy. In the interest of elegance and experimental control, we often prefer mutually exclusive categories and singular causal models…. Support groups cannot be replicated in the lab, but the tendency of some types of patients to seek each other’s company … emerges statistically as a clear pattern replicated across cities.” Although evidence for the effectiveness of peer support interventions is less clear than desirable, overall it supports their effectiveness in bringing about a number of desirable outcomes—such as improved knowledge, coping skills, and sense of self-efficacy—across a wide range of mental and general medical conditions, including HIV/AIDS (Spirig, 1998) and cancer (Barlow et al., 2000; Dunn et al., 2003; National Breast Cancer Centre and National Cancer Control Initiative, 2003; Campbell et al., 2004; Zabalegui et al., 2005; Ussher et al., 2006). However, not all patients may need or benefit equally from participation in peer support groups (Helgeson et al., 2000); those with the lowest self-esteem and self-efficacy in coping with depressive symptoms appear to benefit most (Helgeson et al., 2006). Better understanding of the effectiveness of peer support groups will require more randomized controlled trials in which the participants, content, and outcome variables are clearly delineated. These trials also should involve multiple centers so as to encompass populations of sufficient size to allow study of subsamples and types, duration, and content of interventions. Use of a standard set of outcome measures across studies also would allow more meaningful comparisons across studies through meta-analysis. Research is needed as well that compares group formats so as to identify the treatment and personal variables that lead to the best and poorest outcomes. Moreover, most peer support groups have developed in middle-class, Caucasian, and female populations; studies involving other ethnic and socioeconomic groups and men are needed, as are studies of one-to-one forms of peer support. The Internet is widely used for providing “virtual” peer support groups. Although such groups are difficult to monitor with respect to their delivery and quality of services (when no facilitator modulates interactions) and will not be easy to evaluate for efficacy, their increasing use suggests that research also should be directed toward assessment of their efficacy, especially since they provide a means to reach home-bound and geographically isolated patients at minimal expense (Eysenbach et al., 2004; Hoybye et al., 2005; Lieberman and Goldstein, 2005; Winefield, 2006; Stein et al., 2007).
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Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs Counseling and psychotherapy Counseling and psychotherapy encompass “a wide range of techniques used by a designated professional that have as their common feature the attempt to influence the patient’s behavior, emotions, thoughts, and attitudes through psychological techniques, most often verbal interchange, in the relationship between the psychotherapist and the patient” (Klerman, 1989:1730). Although counseling and psychotherapy have been found to be effective for a number of different mental health problems in patients with a range of general medical illnesses (Wells et al., 1988; Schulberg et al., 1998), findings on their effectiveness in helping patients with cancer and analyses of these findings in the aggregate have been mixed. The large number of research trials of psychotherapeutic interventions with adult patients4 (conducted at all stages of disease, though focusing mainly on newly diagnosed patients, those in active treatment, and those with metastatic disease) has enabled several meta-analyses and other systematic reviews of the evidence. These reviews also have yielded mixed results because of variations in the criteria established for inclusion as an adequately designed clinical trial; however, they generally have found that evidence supports the efficacy of psychotherapy in the treatment of anxiety and depressive symptoms in adults (Devine et al., 1995; Meyer and Mark, 1995; Sheard and Maguire, 1999; AHRQ, 2002; Barsevick et al., 2002; Rehse and Pukrop, 2003; Pirl, 2004; Jacobsen et al., 2006). In a debate in the Annals of Behavioral Medicine, Andrykowski and Manne (2006) reason that clinically relevant efficacy can be assumed on the basis of two or more well-conducted randomized controlled trials utilizing Consolidated Standards of Reporting Trials (CONSORT) criteria. When criteria for efficacy are highly restrictive (as in Newell et al., 2002—that is, requiring greater than half of outcome measures to be statistically significant)—evidence for efficacy appears to be weaker (Coyne et al., 2006). An additional problem contributing to the mixed results of these analyses appears to be related in part to the fact that most early studies of these psychosocial services did not require elevation of a baseline target symptom in subjects, thus diminishing the likelihood of showing a significant reduction in the identified symptom in some studies. Jacobsen and colleagues’ (2006) comprehensive review found that fewer than 5 percent of studies had required a clinically significant baseline level of distress in their design, an observation made by Sheard and Maguire (1999) years earlier. Nonetheless, the norm for studies of these psychosocial interventions has been to include all patients, regardless of their level of distress. 4 Less research has been conducted on psychological interventions with children with cancer, in part because of their small numbers and evidence showing low levels of psychopathology in children as a group (Patenaude and Kupst, 2005; Pai et al., 2006).
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